Care and support of children affected by HIV and AIDS by International HIV/AIDS Alliance

Supporting community action on AIDS in developing countries

Care and support of children affected by HIV and AIDS: a family centred approach HIV Update No 7 October 2010

This is one in a series of regular HIV updates from the International HIV/AIDS Alliance (‘the Alliance’). This update summarises the key approaches, interventions and models of delivery we use when using a family centred approach to provide care and support for children affected by HIV and AIDS. The update includes:  Definitions of a family centred approach  Background to the approach  The importance of using a family based approach  Reaching marginalised children and families  Addressing the health of family members  How to implement a family centred approach  Understanding family relationships  Resourcing a family centred approach  Monitoring a family centred approach  Key challenges and learning points  References

For further information please contact: Kate Iorpenda, Senior Adviser, Children and Impact Mitigation Email: kiorpenda@aidsalliance.org International HIV/AIDS Alliance (International Secretariat) Telephone: +44(0)1273 718900 Fax: +44(0)1273 718901 mail@aidsalliance.org www.aidsalliance.org

HIV Update 7: Care and support of children affected by HIV and AIDS – a family centred approach 1

1. Introduction A ‘family centred approach’ is an increasingly important concept in HIV programming for children. Research carried out by the Joint Learning Initiative on Children and AIDS presented strong evidence to support this approach (JLICA 2008). However, the application of the evidence and its translation into programming practice has been limited. Within the Alliance we have a number of programmes responding to the needs of children affected by AIDS and many are taking a more integrated and comprehensive approach that puts families at the centre of programmes supporting children affected by HIV and AIDS. The Alliance is currently developing a good practice guide in collaboration with Save the Children UK to provide programmers around the world with guidance on how to adopt a family centred approach to their HIV programming. This technical update has been written to synthesise the thinking and evidence in preparation for our more extended guidance. There is limited documentation of programmes that take a family centred approach to HIV prevention, treatment and care. However there is a selection of models demonstrating the benefits of a family centered approach in reaching children and providing the range of support and services they require. These models also provide an indication of the resource implications of this approach.

2. What is a family centred approach? Family centred approaches were first defined in America in the context of health care provision for children. Definitions were shaped around 4 key concepts (Richter 2010): 1. 2. 3. 4.

Families are constants in the lives of children (and adults) while interventions through programmes and services are intermittent and generally short lived. Families must be variously and inclusively defined Family centred approaches are comprehensive and inclusive Love and care within families, when recognised and reinforced promote improved coping and wellness among children and adults.

More recent descriptions of family centred programming in the context of HIV and AIDS include: 1. 1. 2.

Addressing the needs of the whole family, rather than the needs of particular individuals within the family Addressing both social care and health needs Needs are met by a number of different groups and referral and coordination is needed.

3. Background UNAIDS estimates that 15 million children between 0 and 17 years old have lost one or both of their parents to AIDS (UNAIDS 2007). However approximately 95% of these children still live within family settings (Richter 2010). Therefore strengthening a family’s ability to care for children must be a key strategy for the HIV and AIDS response. Families are the unit that provide children with love, care and protection to support their physical, social and psychological development. Families are diverse in their structure. Family can be defined as ‘social groups connected by kinship, marriage, adoption or choice’ (JLICA 2009). They are not necessarily based on biological connections but also on social networks of individuals sharing culture and values, interactions and obligations. Families can therefore be groups of street children, sex workers living with their children, a grandmother looking after her biological grandchildren, a couple caring for fostered children, a teenage boy caring for younger siblings supported by the community.

Not all children can be cared for within their biological or extended families. Some family settings may not be safe places for children and alternative care is at times required. But evidence demonstrates that children develop best in settings where they can make life long attachments, are loved and cared for and supported in their growth and development. (Richter, Foster & Sherr 2006); (American Association of Paediatrics 2003); (Wakhweya et al 2005). Therefore our goal for all children should be permanency within a family-like setting. The impacts of HIV and AIDS have changed the way many families are structured. HIV and AIDS has impacted on the resilience of some families and their ability to provide the support that children need. This has often led to children being put into alternative care. Programmes should be focussed on strengthening families and communities in order that they are able to manage the challenges of HIV and continue to be able to sustain their support to children. The Framework for protection care and support of orphans and vulnerable children living in a world with HIV and AIDS (UNICEF 2004) first articulated the family centered approach to HIV programming for children. In 2006 the Joint Learning Initiative on Children and AIDS (JLICA) was launched, bringing together policy-makers, practitioners, community leaders, researchers, and people living with HIV in order to provide a collaborative analysis of good practice in responding to children and families affected by HIV and AIDS. The research took the themes of the 2004 framework and considered the following themes:   

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family strengthening family centred services community mobilisation national social protection.

A synthesis of the global research and practice was published in 2008 in a report called ‘Home Truths’ (JLICA 2009). This report advocates for a family centred approach to HIV programming for children and defines it as a: “comprehensive, coordinated care approach that addresses the needs of both adults and children in a family and attempts to meet their health and social care needs, either directly or indirectly through strategic partnerships and/or linkages and referrals with other service providers”‟ (Wakhweya et al 2008) The JLICA learning papers and final report present evidence of the burden carried by families and communities in caring for children affected by HIV and the limited external support they receive.

4. The importance of using a family based approach Families are constants in children’s lives and through love, care and support children can be protected from the impacts of HIV and AIDS. In regions of the world where AIDS has had the greatest impact, there is an assumption that families are struggling to cope and that they are disintegrating. However, research has established that there is a need to understand the dynamic nature of families and their ability to change and adapt, and that interventions at each stage can keep families together, and able to deal with the impacts of HIV and AIDS (Abede & Aase, 2007); (Wakhweya et al 2008). HIV is a multi-generational, family disease. HIV transmission occurs in families. The majority of care and support is provided within families and families are the unit that needs to be strengthened to provide the best support. For too long HIV prevention, treatment and care programmes have focussed on the individual, even in the response to children, by focussing attention on orphans as the most vulnerable and incorrectly presenting them as alone. Orphaning has been central to the identification of children who need support within the HIV and AIDS response yet 88% of children classified as ‘orphan’ have one surviving parent (Belsey 2008; Sherr 2008).

HIV Update 7: Care and support of children affected by HIV and AIDS – a family centred approach

A key finding of recent UNICEF research on vulnerability is that orphaning is not the most helpful indicator of vulnerability to HIV and AIDS (Akwara 2010). Instead, it is the complex factors such as poverty, sickness in the family and social exclusion that make children and families vulnerable. In addition, household wealth is found to be a more effective indicator of vulnerability. Many HIV programmes do focus on the family, but for others the shift from individual to family requires a change in thinking and often in resourcing, planning and implementation. For example this might mean changing the way home based carers or community carers provide care. Usually they focus on the needs of an adult living with HIV. A family centred approach broadens this care to include the needs of children within a household. This is sometimes described as family case management or care management, terms more commonly seen in social work. For existing home based care or antiretroviral therapy (ART) programmes this might require practitioners to acquire new skills in communicating with children, greater awareness of child protection issues within families and an understanding of services beyond health for referrals and linkages. This can mean organisations need to provide more training and supervision, or adopt case management approaches. This can place a greater burden on volunteer caregivers and small community organisations, particularly where there is a limited social welfare structure with established social work and child welfare professionals.

5. Reaching marginalised children and families Many children live within families that are not formally recognised or are excluded from society. For example the children of sex workers, people who use drugs, men who have sex with men, prisoners and migrant populations, along with street children. Programmes that take a family centred approach need to put systems in place to ensure they are reaching and including the most marginalised children and families. These families often face barriers to accessing support for their children; including stigma, discrimination, criminalisation, and family separation. These barriers can prevent these families from seeking support or leave them excluded from services by communities and governments. Unless these barriers are addressed, these children will miss out on school, basic health care, nutritional support, social interaction and entitlements. These families are often not legally registered due to the criminalisation of their activities or professions and many of their children lack birth certificates and therefore are unable to access services and entitlements. In addition there are children who are living outside family care in institutions, work camps, domestic service, detention centres. Many of these children have surviving relatives and a family centred approach should recognise the importance of reuniting families by removing them from the institutional setting and placing them back in a family setting, ensuring they are getting the care and protection they are entitled to. The cost of institutional care for children is up to ten times more than costs of family care (Desmond et al 2002). There needs to be a reallocation of the investment into families and communities so that children can be better cared for within a family setting. Strengthening all families caring for children affected by HIV and AIDS in order to keep families together has to be a priority but currently only a small percentage, approximately 15%, of families are receiving any kind of external support (JLICA 2008). Families that are weakened by the economic and social challenges of HIV, become more vulnerable to breakdown and separation.

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6. Addressing the health of family members Keeping families together and strong depends on the health of family members. The health, well-being and survival of the mother is critically important, particularly for young children under the age of six years. Research from East Africa has shown that maternal survival and HIV status are strong predictors of child survival , that higher maternal mortality in HIV+ women compounds the risks for children regardless of their HIV status (Zaba et al 2003); (Nakiyingi et al 2005); (Shema et al 2009). Programmes concerned with the survival and well being of children need to be as focussed on mothers’ access to ART, and nutritional and adherence support. Research shows that the health of female caregivers, particularly mothers, grandmothers, older sisters and aunts, has a significant impact on household welfare including the nutritional status of children. The deaths of adult women decreases opportunities for children to attend school, while increasing nutritional insecurity and household poverty (Zoll, 2008). There is also a growing body of evidence of the importance of fathers and other male relatives in the survival, care and wellbeing of children. Male involvement in preventing mother to child transmission (PMTCT) can lead to greater attendance at clinics and adherence to ART, as well as lower HIV transmission rates and improved child survival (NAM 2006). In a study from Kenya women accompanied by a partner for PMTCT services were three times more likely to return for ART and had improved post partum follow up and adherence (Aluisio et al 2009). This evidence emphasises the importance of focusing on the health needs of all the family. Keeping parents and carers alive and supporting their needs is an important strategy to improve the survival and well being of children.

7. How to implement a family centred approach Interventions that target more than one individual deliver critical opportunities to reach family, siblings and carers. For example, treatment for parents living with HIV can significantly impact on the survival of children. Social protection measures such as cash transfers, small regular payments to families, can strengthen a family’s ability to access education and food. Health services can integrate with or work closely with other support services to improve family health. This reduces the financial and time burden on families to access different services at different locations. It can also increase their access to additional services such as education, economic support and social welfare entitlements. Legal reform and legal services that address the barriers facing families in accessing services can help to increase birth registration, access to social protection schemes, access to free education, support on parental rights and reduce family separation. Law reform on issues such as criminalisation of drug use, sex work and HIV transmission can encourage the most marginalised families to seek support. Laws are needed that create an enabling environment which builds the trust and openness needed to reach people. Service providers and communities need to understand the specific needs and rights of all families, biological or chosen. Taking a family centred approach can improve the uptake and quality of services provided to families. Services that are co-located and addressing all family members reduce the amount of time visiting health facilities and therefore reduce the time away from work or school and travel costs. It also increases the opportunity to reach more people with a greater range of services. For example locating voluntary counselling and testing services (VCT) within antenatal care, or early childhood development as part of PMTCT, promotes the overall health of families over a longer period of a child’s life.

HIV Update 7: Care and support of children affected by HIV and AIDS – a family centred approach

Research on the wider impact of home based models of VCT is provided by a study based on programming in Uganda (Were et al 2006). VCT was offered to people in their homes, rather than at a separate HIV testing facility. 2,348 household members were tested, Only 25 refused a test. Of those tested 96% had never taken an HIV test. The project led to the provision of HIV treatment to a large number of previously untested children, including 43 who were under five years old. However, nott all families are well functioning and family and gender dynamics affect issues such as ability and consent to test, confidentiality and follow up on results. These dynamics can negatively impact on outcomes but interventions that take account of the social, power and gender dynamics within families can reinforce positive support, adherence, disclosure and care for all family members. Case study one - Uganda: HIV services programme with a family centred approach - reaching more people Community capacity to care for orphans is increasingly overstretched as the number of needy children keeps rising. At the end of 2007, Uganda was home to an estimated one million AIDS orphans. „Expanding the Role of Networks of People Living with HIV/AIDS‟ in Uganda was a three year, USAIDfunded project, implemented by the Alliance between 2006-2009. The project‟s main objective was to use networks of people living with HIV to increase community access to HIV and wrap-around services. The project did this by selecting representatives of groups of people living with HIV and training them in community treatment care and support services as well as in linking and referral to local health services. The network support agents (NSAs) operated in 40 districts in Uganda and as a result 1.3 million people accessed HIV services. In addition by operating in communities at family level the NSAs identified 19,832 vulnerable children who were referred for other services, and where services were under-developed and the value of referral was limited, more than 2,200 vulnerable children were registered through the project for direct food, education, economic strengthening and psychosocial support. The NSA project is followed by a new five year $20 million USAID project „Strengthening the Ugandan National Response for Implementation of Services for OVC (SUNRISE-OVC), which aims to improve access to and quality of services. It is the culmination of six years of collaboration between the US Government, the Government of Uganda and civil society (via the International HIV/AIDS Alliance in Uganda). It is important for programmes to collaborate with other organisations, institutions and government service providers to ensure services are joined up and their value maximised by linkages and referrals to other services and programmes. A family centred approach that builds in greater referrals and linkages to additional services not only leads to an increased awareness of and coordination with other service providers but also a responsibility to assess the quality of services before they are promoted and to establish mechanisms to assess whether the referral was successful. The establishment of national social protection measures, such as child grants, cash transfers, pensions, child protection policies, free basic education, legal reform and policy change can also support families in becoming economically independent and more resilient to the impacts of HIV. “Interventions need to be tailored to strengthen the intrinsic agency and resilience of the family, especially related to preventing the death of surviving parents, and improving the health of adult caregivers in the extended family - particularly grandparents (grandmothers more specifically) - under whom many children thrive and grow; improving the livelihood of families over the long term after short term interventions such as cash transfers and food aid; and, household economic strengthening activities that would assist in improving the capacity of families.” (Wakhweya et al 2008)

Accessing entitlements, grants and pensions or receiving cash payments within national social protection programmes can allow families to reduce their dependency on short term interventions. It can enable them to make their own choices about managing the care and support of all family members in a more sustainable way and research shows that this can lead to positive benefits such as increased school enrolment and attendance and improved nutritional status (Adato M & Bassett L 2009). Case study two - India: Shift from pure service delivery to improved linkages and referrals for government social welfare CHAHA is a programme supported by The Global Fund to Fight AIDS, TB and Malaria and implemented by the International HIV/AIDS Alliance in India in four states. The original design focused on the development of a service package for children around HIV testing and treatment, education and nutritional support aiming to reach 64,000 children. While the strategy of direct services was successful it became clear that with growing estimates of children affected by HIV in India, the project had to look at a more scalable and sustainable response that linked families rather than individual children to support and entitlements and could be integrated into the national government response. As a result the programme has shifted its emphasis to establish linkages for families and households to government social welfare support to widows pension, ration cards, nutritional services as well as income generation support. The programme experience in referrals for medical services like ART and PMTCT, provided valuable learning for building additional linkages and referrals to access government entitlements. The project has developed a directory of essential services and government schemes which families are supported to access by the projectâ&#x20AC;&#x;s 350 outreach workers. Continued advocacy at national, state and district level ensures a systematic link with the government departments around these supports, addressing the remaining barriers. The programme also advocates for new schemes and works with communities around demand generation for services that are needed.

8. Understanding family relationships Taking a family centred approach it is not just about reaching more members of a family with services. It is also about understanding family relationships and how they can affect the uptake of information, advice or services. For example we need to understand the barriers women living with HIV face when acting on health advice about exclusive breastfeeding and appropriate infant feeding. Family pressure from partners, in-laws and mothers to do things differently can complicate family dynamics. Health takes place within a set of social relationships, cultural norms and practices and by using a family centred approach we learn to address family relationships sensitively, and find information, advice and approaches that work within the family setting.

HIV Update 7: Care and support of children affected by HIV and AIDS â&#x20AC;&#x201C; a family centred approach

9. Resourcing a family centred approach There are concerns that a family centred approach requires multi-disciplinary teams that integrate multiple services and case management and this would mean increased costs. There has been little work done to analyse cost and this is an area that needs to be researched and documented more systematically. More comprehensive services located at one point of service will require greater investment in service provision and training, but there are cost benefits to be gained from co- location such as reduced staffing and infrastructure costs, and reduced transport and time costs for families. Importantly we need to quantify the benefits – in terms of costs and in terms of health outcomes - of reaching more people through one entry point. Some programmes are demonstrating that the integration of services can lead to a range of positive health outcomes. The MTCT+ programme (Betancourt et al 2010) operates in nine countries in Africa and in Thailand. Since the early 2000s, the PMTCT programme has been an entry point for comprehensive care services for families affected by HIV and to reach other family members. The programme goes beyond the prevention of vertical HIV transmission to include safe delivery, ART, early childhood development, breastfeeding and nutritional advice, antibiotic prophylaxis, family testing, TB care, vaccinations, sexual and reproductive health and psychosocial support. The programmes have shown positive results in the enrolment of HIV positive pregnant women into the programme but enrolment of children has been less successful. Further work on removing the remaining barriers for families such as family disclosure, stigma, gender inequity and social exclusion needs to be undertaken. In Ukraine, Russia and Vietnam, the MAMA+ project focuses on preventing children born to HIV-positive mothers being abandoned. It supports pregnant women who use drugs with medical and social support services to keep mothers and babies together such as welfare support, day care, vocational training, HIV information and counselling. Previously up 20% of children born to HIV positive mothers were abandoned in maternity hospitals. The programme provided early identification of HIV positive mothers, PMTCT services, referral for harm reduction and treatment services, psychosocial support to mothers and parenting support. It has led to significant reductions in the levels of abandonment (Healthright 2010). Case study three - Cote d’Ivoire: linkages and referrals between available state health services and community based interventions Alliance partner in Cote d‟Ivoire, Alliance Nationale Contre le Sida en Cote d‟Ivoire (ANS-CI), received support in 2006 from the Elizabeth Glaser Paediatric AIDS Foundation to implement activities on PMTCT. In order to promote a more family centred, sustainable and comprehensive package around PMTCT, ANCCI put in place an intervention model called ICOP (Initiative Communautaire Participative). In this model, prevention and care and support activities take place at a voluntary counselling and testing (VCT) centre within the community. VCT centres are a three-way partnership between a local civil society organisation, decentralised local government (the local council, Mayor) and ANS-CI. Each party has specific duties. This model allows for greater community intervention and for a greater spread of PMTCT support. It includes an effective reference and counter-reference system between available health services (VCT, ARV and PMTCT) and community-based organizations working to combat HIV/AIDS in a given geographical area.

10. Monitoring a family centred approach Monitoring the outcomes for children of using a family centered approach presents an interesting challenge. Many of the tools aimed at measuring the impacts of programmes for children such as the Child Status Index (MEASURE 2009) or the OVC wellbeing tool (CRS 2009) focus on the individual child. The tools gather data on feeding, educational attendance and general appearance of the child but do not consider siblings or other family members. We need to develop and adapt tools that consider the whole household, its food security, its wealth, the attendance and attainment in school of all children and the wellbeing of all members of the family. Some good practice in this area is emerging, one example being a Family Health International project in Malawi which is adapting the Child Status Index to better include dimensions on the family within surveys and assessment tools.

11. Key challenges and learning points Implementing a family centred approach within our HIV programming is an important goal. We can improve the health and well being of vulnerable children by improving the health and well being of their families. A family centred approach can help us to achieve long term positive impacts for children in terms of their health, education and social development. Key challenges remain for organisations in identifying and reaching the most marginalised families and ensuring they are included in family centred programming. It requires: 

innovative partnerships between organisations and coordination of services to maximise the opportunities to get a broad range of services to all families.

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programmers to think about children within a network of social relations and diverse constructions of family and to develop new ways of working that take a case management approach.

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a reallocation of resources, different training and greater evidence of the positive impacts of the approach.

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a truly integrated and comprehensive programme of continued investment in a range of services, recognising the existing constraints on availability and access to services such as ante-natal care and obstetrics, limited coverage of early infant diagnosis, early childhood development programmes, paediatric ART and centralised services.

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an evidence base on the resourcing of a family centred approach. The potential cost benefits have been highlighted but there is a need for more systematic monitoring to understand this more clearly. There is a considerable gap in documentation of family centred models of care.

However the growing evidence supports the continued implementation of a family centred approach. We need to adapt our HIV programming to be family centred in order to build strong, resilient families that can provide and sustain life-long love, care and protection of their children.

HIV Update 7: Care and support of children affected by HIV and AIDS – a family centred approach

12. References 1. 2. 3. 4.

5. 6. 7. 8. 9.

10. 11. 12. 13.

Abede, T & Aase, A. (2007) Children, AIDS, and politics of orphan care in Ethiopia: The extended family revisited. Social Science & Medicine, Adato M & Bassett L (2009) Social protection to support vulnerable children and families: the potential of cash transfers to protect education , health and nutrition.AIDS Care Vol21 Number S1 2009 Akwara et al (2010) Who is the vulnerable child? Using survey data to identify children at risk in the era of HIV and AIDS. AIDS Care Aluisio A et al(2009). Male partner HIV-1 testing and antenatal clinical attendance associated with reduced th infant HIV-1 acquisition and mortality. 5 IAS Conference on HIV Treatment, Pathogenesis and Prevention, Cape Town, abstract TUC105, 2009. http://www.ias2009.org/pag/Abstracts.aspx?AID=1530 American Academy of Pediatrics Report of the Task Force on the Family PEDIATRICS Vol. 111 No. 6 June 2003, pp. 1541-1571 Belsey M (2008). The family as the locus of actions to protect and support children affected by or vulnerable to the effects of HIV/AIDS: A conundrum at many levels. JLICA LG1 CRS (2009) Orphan and vulnerable children wellbeing tool Desmond C. et al (2002)- Approaches to caring, essential elements for a quality service and cost effectiveness in South Africa. Evaluation and Program Planning Health right (2010) UKRAINE: MAMA+ Project for the Prevention of Abandonment of Children Born to HIVPositive Mothers http://www.healthright.org/where-we-work/ukraine/ukraine-mama Joint Learning on Children and HIV/AIDS (2009) Home Truths: Facing the Facts on Children, AIDS and Poverty. MEASURE (2009) Child Status Indexhttp://www.cpc.unc.edu/measure/tools/child-health/child-status-index Nakiyingi JS et al (2003) Child survival in relation to mother's HIV infection and survival: evidence from a Ugandan cohort study. AIDS. 2003 Aug 15;17(12):1827-34. NAM (2006) HIV & AIDS treatment in practice: Getting the most prevention and care out of programmes for the prevention of mother-to-child transmission http://www.aidsmap.com/resources/hatip/Getting-the-mostprevention-and-care-out-of-programmes-for-the-prevention-of-mother-to-childtransmission/page/1065531/#item1065534

14. Richter, L. (2004) The importance of caregiver-child interactions for the survival and healthy development of young children: a review. Geneva: World Health Organization. 15. Richter (2010)An introduction to family-centred services for children affected by HIV and AIDS Journal of the International AIDS Society 2010,(Suppl 2):S1 16. Richter (2010) Social cash transfers to support children and families affected by HIV/AIDS. Vulnerable Children and Youth Studies. 17. Shema N et al (2009) HIV-free survival at 9-24 months among children born to HIV infected mothers in the National Program for the prevention of mother-to-child transmission of HIV in Rwanda: a household survey Epidemiology. 2005 May;16(3):275-80.Sherr L (2008). Strengthening families through HIV/AIDS prevention, treatment, care and support.JLICA LG1 18. Steintz (2009) The Way We Care: A Guide for Managers of Programs Serving Vulnerable Children and Youth. FHI 19. UNICEF (2004) Framework for protection care and support of orphans and vulnerable children living in a world with HIV and AIDS 20. Wakhweya A, Dirks, R. et al, (2008) Children thrive in families: family-centered models of care and support for OVC affected by HIV/AIDS, JLICA LG1, 21. Were WA et al.(2006) Undiagnosed HIV infection and couple HIV discordance among household members of HIV-infected people receiving antiretroviral therapy in Uganda. JAIDS 22. Williamson and Greenberg (2010) Families, not Orphanages: Working Paper. Better Care Network 23. Zaba B et al (2005) HIV and mortality of mothers and children: evidence from cohort studies in Uganda, Tanzania, and Malawi. Epidemiology. 2005 May;16(3):275-80.

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